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From the outside, a life with diabetes may look something like:
- get medications
- see a doctor; determine doses and diet plan
- follow all of the rules and instructions from your doctor between appointments
- your health reflects your efforts
- everything is awesome, like this:
But from the inside, we know differently.
We know that, for the most part, health doesn't happen in those 15 short minutes we may have with an endocrinologist or CDE every few months (so that's, what, an hour a year?). Health happens in those thousands of moments in between: calculating, dosing, measuring, deciding, reacting, guessing, and worrying at home.
It happens in all of the fingersticks, the injections, the pharmacy refills, the stubborn highs, the fights for insurance coverage to gain the privilege of using the devices and medications that maybe can help you remain healthy, the act of remembering to TAKE those medications, the time and sleep and precious moments lost to hypoglycemia, the management of all of that data.
And you know what? None of that, to me, is the hardest part about living with diabetes.
No - the hardest part of living with diabetes is what it does to your mind; your emotional state; your spirit.
The hard part is feeling proud that you remembered to do everything "right" the night before and then having that pride immediately deflated by a number you didn't expect to see on your meter the next morning.
The hard part is seeing the look of disgust on a parent's face as they shield their children's eyes from you as you inject (in what you thought was a discrete way) insulin in public, so that you can eat the meal in front of you.
The hard part is knowing that someone out there wonders if wearing a medical device that could improve their health will come at the cost of their self-esteem.
The hard part is knowing that on my hip and inside of a tiny machine resides a potentially lethal amount of a very potent drug that I have to administer in order to live. If I get the dosing wrong it could kill me, and I have to accept this. I have to be okay with this.
The hard part is having to always assume, and plan for, the worst case scenario.
The hard part is not letting the warped version of what society has defined as an "ideal" prevent you from taking the amount of insulin your body needs.
The hard part is balancing the "could" with the "should".
The hard part is knowing that maybe, no matter what you do or how hard you try, you may still experience complications.
The hard part is not letting depression run the show.
The hard part is talking yourself out of a "why bother?" attitude, self-harm, or even suicide, because if my best has no guarantee of being good enough.... then what is the point?
I'll say it again: the hardest part of living with diabetes is what it does to your spirit. It gives you so many reasons to just throw up your hands and not even try.
This is exactly why we need each other. This is why being connected to other people with diabetes is one of the most important things we can do for our health. Seeing your own experiences in the words of others gives us relief... so it isn't just me. This is a version of "normal". I'm not alone. This is something I can actually talk about, and people will understand me. Other people get what this is like; even the parts I don't dare say out loud.
It's really, really hard to allow ourselves to be vulnerable with each other but I find that there is a certain empowerment that comes with allowing ourselves to let go of a little fear. Add in humor, and you've hit my sweet spot of emotional support.
This is how I cope.
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